INFLAMMATORY BOWEL DISEASE PATIENTS’ PERSPECTIVES ON BIOSIMILARS LUISA AVEDANO EFCCA CEO luisa.avedano@efcca.org www.efcca.org 1
DISCLOSURE SLIDE The BAB survey, the Advocacy and Patient’s safety Workshop and the European Parliament conference have been supported by unrestricted grants from Abbvie, Merck-MSD, Pfizer 2
INDEX • About IBD • About EFCCA • EFCCA activities around biosimilars – EFCCA’s “BAB” survey – Advocacy and Patient’s Safety Workshop – European Parliament event • Take home messages 3
ABOUT INFLAMMATORY BOWEL DISEASE (IBD) Collective term for chronic inflammatory conditions of the bowel. Crohn’s disease and ulcerative colitis are the most common forms. Over 3 million patients in Europe, men and women alike. IBD can occur at any age, but peak age for diagnosis is 10-40. The diagnosis is usually based on an endoscopic examination and biopsies. Symptoms may include diarrhea, abdominal cramps, pain, rectal bleeding, weight loss, fever, fatigue and extra intestinal manifestations of e.g. eyes, joints or skin. Patients may experience long periods of remission and/or recurrent flare-ups. There is no known cure for IBD, but symptoms and impact on a patient’s life can be minimized by appropriate medical management. esmo.org
ABOUT EFCCA The European Federation of Crohn's and Ulcerative Colitis Association is an international non-profit organization of 34 patient associations (31 in Europe, 3 outside the EU) Members: Austria, Belgium(2), Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Luxembourg, Malta, Norway, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, Turkey, UK; Argentina, Israel, New Zealand Mission: to improve the well-being of people with IBD and give them a louder voice and higher visibility in Europe and worldwide; esmo.org
EFCCA ACTIVITIES AROUND BIOSIMILARS Biologics and Biosimilars on line Survey – BAB (2014-2015) Purpose: to find out patients’ perspectives about biosimilars Outcomes Many IBD patients have not heard of biosimilars, and those who have, have worries. More information is needed. Extrapolation is seen with skepticism. (Switching was not an issue at that time) Patients want to be informed and involved in the decision-making process. Patients accept interchangeability under certain conditions, but want transparency and to know what they are taking. Patients want to be aware of what they are taking. esmo.org Traceability is important.
AdvocacyWorkshopon Patient Safety Purpose : To create greater awareness amongst patient communities regarding the issues impacting access to biologic and biosimilar treatments and therefore to provide or improve basic understanding of the science and issues associated with biologicals and biosimilars. To provide training on how to employ effective advocacy and communication strategies with the goal of raising awareness and understanding amongst key policy makers To allow patient advocacy groups from different geographies to network and share esmo.org best practices
AdvocacyWorkshopon Patient Safety Outcomes : Need for strong collaboration in the patient community to have a louder voice and high visibility in particular with policy and decision makers. Need for patient participation in decision- making. As one group put it: “no decision about me without me.” Need for communication in switching situations between all relevant stakeholders (pharmacist, physician and patient) in order to optimize the treatment outcome. Need for information to empower patients to be involved in decision making and management of their conditions. esmo.org
Patient Advocacy and Safety Conference Purpose Explore the topic of biologics and biosimilars and how different policies and practices across Europe impact on patients. Outcomes When it comes to biologics and biosimilars, patients still have concerns around sufficient patient education, extrapolation, switching, traceability, patient consent, and access. Patient group consensus is needed on several areas including increasing credibility among physicians, educating and activating members, involving patients in research and forming scientific advisory committees within patient groups. esmo.org
Lessons learned & take home messages More patient education is needed to • improve knowledge and dispel concerns about biosimilars • facilitate patient involvement in decision-making • empower patients and improve patient advocacy In order to have a louder voice, exchanging knowledge with other countries and uniting with other patient groups need to be promoted Communication between all stakeholders – physicians and nurses - needs to be improved for better transparency in e.g. switching situations Awareness of the unmet needs of the IBD community need to be raised among all esmo.org stakeholders
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